Loss of Timeline
When you become a parent it’s almost automatic to write down the dates of your children’s milestones. Rolling, sitting, walking, talking, running, etc. But when they have a terminal illness like MLD, you begin to avoid those dates because it generally means loss of milestones. Looking back at my notes, I did not put a…
A Sigh of Relief
After about 6 weeks from returning from Keira’s check up in Italy, we finally got the results of the very last test we were waiting on – the main test we went there for because it cannot be done in US labs – to see if her body was still creating antibodies to the ARSA…
Advocating for Your Special Needs Child
Rod Paige (the 7th United States Secretary of Education) once said “There is no more powerful advocate than a parent armed with information and options.” Now, as a special needs parent, I fully understand the truth in this quote. Yes, every parent must know that part of their job is advocating for their child. It’s…
Med Changes and Eye Gazes for Livvy
It has been a while since I posted. Mainly because it has been a busy month for all of us and one of many ups and downs for Livvy. While Dave and the girls were in Italy, Livvy started having these random bouts of pain that were inexplicable. Nothing looked like it was physically or…
Livvy’s Wish Came True
Today, thanks to the wonderful souls over at Make A Wish Arizona, Livvy’s wish came true – after only requesting it a few short weeks ago – and she was so happy! If you saw my previous post, you know it was a swing set for her to enjoy with her sisters. And while parts…
Results from Keira’s 6-Month Post GT Check Up
On May 11th, Dave, his Mom, Eva and Keira returned from a two week trip to Milan, Italy for Keira’s six month check up after the gene therapy she received in October 2020. I stayed home with Livvy since the travel, time changes, etc. would have been too hard on her. And let me tell…
For Those Extra Special Moms
To the mom who didn’t get “just a healthy one”: A healthy baby .That’s what you want. Boy or girl? Doesn’t matter.Just a healthy one. With ten perfect fingers and ten perfect toes.A tiny smile and button noes. A brain that works as mine and yours.Tests coming back with perfect scores. A heart that beats…
Focusing on the Smiles
I don’t like posting about the hard days. They are hard enough as it is. Why rehash it for everyone else? What I like to see on social media is the GOOD. There is enough bad in the world and on the news every day. And while we have been dealt plenty of bad in…
Our 1st Return Trip to Italy
This morning, Dave and his Mom, Tammy, left for Italy with Eva and Keira for her 6-month post gene therapy check up. I’ve been dreading splitting up the family for this trip but it was the only way we could make it work. The trip would have been too hard on Livvy. So off they…
Olivia’s Wish
Since getting Olivia’s diagnosis, I have heard other MLD families talk about Make a Wish. I was familiar with the organization from being on the committee for their annual Wish Ball one year, which helps raise vital funds to grant wishes for all of the kiddos. Never once did I think my kiddo would be…
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